Mild osteopenia, neurological problems, stones, calcification of organs, high blood pressure….not a pretty picture, but it is all part of my story of how, after far too many years, I was finally diagnosed and able to overcome the symptoms of primary hyperparathyroid disease through the surgical removal of a non-cancerous adenoma.

Primary hyperparathyroid disease is when one or more parathryoids (we have 4) becomes an adenoma and disrupts the regulation of calcium in the body, as that’s the job of the parathyroid glands. It is considered to present classically if a person has high calcium, high parathyroid hormone levels and low Vitamin. D. However when a person presents classically, what it really means is that the disease has likely gone undiagnosed for many years. This was true in my case.

From 2003 – 2005,  I was seeing an MD who claimed to be an expert in unraveling complicated medical conditions. This MD ordered and reviewed the lab results highlighted in blue below.

Normal ranges referenced on each of my lab reports are as follows: 

• Calcium (adults) –  8.9 to 10.3 mg/dL.
• VitD-25  – 30.0 to 100.0 nanograms per milliliter (ng/mL).
• Ionized Calcium – 4.8 to 5.5 milligrams per deciliter (mg/dL)
• Parathyroid Hormone (PTH) –  12 to 88 picograms per milliliter (pg/mL).

Clearly my calcium values were outside the normal range in 2003 and 2004 and at the upper limit in 2005.  It was disheartening to realize years later that this doctor failed to order a simple follow up test to measure parathyroid hormone levels (PTH) after seeing not just one, but three high calcium readings, every year for three years. Calcium should never be outside of a very tight normal range.

Normal Range For Blood Calcium Levels Vary Lab and by Age – 

It is important to mention that normal value ranges may vary among the different laboratories. For example, my 10.3 value would have been outside the normal range at a different lab. The reason for this is that many labs do not correct the calcium range for the patient’s age which is critical to diagnosis. 

According to Dr. Norman, an expert parathyroid surgeon,

“Teenagers and people in their early 20’s can have calcium levels up to 10.7 mg/dl. Once you are over 30 however, you should have all calcium levels in the 9’s with the upper limit of normal being 10.0 or 10.1 mg/dl. An adult with calcium levels in the 10’s is very likely to have a parathyroid tumor. Unfortunately, most doctors don’t understand that calcium levels change with age, so they are often confused on this issue.”

It’s About Time….A Diagnosis! 

My general physician from 2009 – 2011, ordered the lab results highlighted in green above. It was routine lab work on 5/13/11 that showed my blood calcium at 11.1 that led to the diagnosis of primary hyperparathyroid disease (pHPT). It is extremely disappointing to see that the doctor wasn’t equally alarmed by a value of 10.6 two years earlier in 2009.

8 Years and Counting

While my blood work clearly indicates I was suffering from pHPT in 2003, 8 years prior to my diagnosis, I highly suspect that I may have had the disease much longer. Unfortunately I do not have copies of lab reports prior to 2003 to prove this. However, the health problems I experienced prior to 2003 which I list below, seem to be indicative that the parathyroid tumor was wreaking havoc on my health.

What do you think? 

Could an astute physician and/or surgeon properly educated in the signs and symptoms of pHPT possibly have made a diagnosis sooner?

• Mid 30’s – Gallstone attacks resulted in my gall bladder being removed.

• Early 40’s – Hashimoto’s thyroiditis symptoms, many similar to hyperparathyroid disease, that would not resolve with proper dosage of levothyroxine medication when T3, T4 and TSH readings were within relatively normal ranges.

• Mid 40’s – High blood pressure along with intermittent episodes of heart palpitations, muscle fatigue and other neurological symptoms.

• Age 42 –Osteopenia diagnosed through a DEXA scan.

• Age 44 –Partial Hysterectomy – Heavy bleeding and unbearable pain resulting in a diagnosis of fibroids that were to be surgically removed. However, the surgeon reported to me after the surgery that the uterus was completely calcified, and therefore a partial hysterectomy was required. The surgeon stated that she had never seen anything like it. Interestingly enough, over time calcification of organs can occur as a result of  excess calcium being drawn out of the bones due to overproduction of parathyroid hormone due to a gland or glands becoming a tumor.

• Age 53 – Hospitalized with a kidney stone misdiagnosed as a UTI. Stone later passed on its’ own.

Moving Forward – GP’s Plan For Confirming Diagnosis and Surgeon Referral

Once primary hyperparathyroid disease was suspected my GP’s plan was to order additional lab tests to measure Ionized Calcium and parathyroid hormone levels (PTH) and a scan to confirm the diagnosis and locate the adenoma. She stated that the solution, if parathyroid disease was confirmed by a scan, would be surgical removal of the adenoma by an experienced surgeon at a well-known urban medical center. My first question,  having undergone other laparoscopic procedures and surgeries, was whether the surgery could be minimally invasive. She expounded that it was a relatively complicated surgery that would be invasive and require a large incision be made at the front of the neck in order to remove the adenoma. Before leaving I was given a prescription of Vitamin D-3, as my lab value was measured at 14, again the normal range is 30.0 to 74.0 nanograms per milliliter (ng/mL).

Research

In the meantime, while waiting for the Ionized Calcium and PTH results, I turned to the web for information. After researching many websites, and calling two prestigious medical centers, I was shocked by the drastic differences in how the surgery was being performed depending upon the surgeon. Realizing this, I honed in on the Norman Parathyroid Center (NPC), for while it was a considerable distance to travel in order receive the surgery there, I thought it would be worth it because of their level of expertise and the minimally invasive radio-guided technique they use (MIRP) through a 1 “ incision, with a surgery time of approximately 18 minutes. I was reassured by the fact that all 4 parathyroid glands would be checked, which would help ensure I would be cured and not need a second surgery as approximately 30 % of patients may have a second tumor.

I also noted two other pieces of information on the NPC website, parathyroid.com, that were contrary to my doctor’s plans for me:

1) Scans should not be used as a diagnostic tool, but instead, sestamibi scans should be done prior to surgery only to inform where the adenoma(s) will not be found, not where they may be lurking.

Note: Many surgeons will not operate without a positive scan as they are intend to  perform a focused surgery (go in and remove the adenoma seen on the scan). As adenomas often do not show up on scans or images, this can results in delays and physicians taking the stance of watching and waiting.  At the Norman Parathyroid Center eligibility is determined by lab results – if you have hyperparathyroidism they will operate. They do not require a positive scan because they are experts in locating and evaluating all four glands in all patients, and this almost always takes these less than 20 minutes. 

2) Vitamin D supplements should not be taken prior to surgery by patients who have primary hyperparathyroid disease. Vitamin D levels often drop to protect the body from excess calcium absorption, so taking Vitamin D in this case can actually make symptoms much worse, possibly putting a patient at risk.  Therefore, I made the decision to hold off taking the Vitamin D prescribed while waiting for surgery.

Diagnosis Confirmed

The lab work came back and confirmed my GP’s suspicions- Ionized Calcium was high at 6.3 and the PTH reading was very high at 122.3. Based on what I’d learned through my research, I declined the order for the scan and surgeon referral and instead relayed my lab results to the Norman Parathyroid Center (NPC).

Steps To Surgery

Within a week of submitting my lab work and health history,  I received a phone call from Dr. Norman confirming I was eligible for surgery. He started the call, “Where have you been? You have an adenoma that is making you sick and needs to come out!”

I was scheduled for surgery in a few short weeks on July 26, 2011. A Minimally Invasive Radioguided parathyroidectomy (MIRP) was performed in a 21 minute surgery. All  four parathyroids were checked which included the physiologic assessment of individual parathyroid gland activity (hormone production) in real time. One adenoma producing 3021 hormone (nl= 39-80) PTH was removed. I learned upon waking that the adenoma was attached to my vocal cord, but fortunately no nerves were damaged and I could speak without difficulty. I was grateful that I had been in the care of experts given the complexity of the surgery due to the adenoma’s location. Within a few months I noticed that I was completely symptom free.

More To Unravel

It is also exciting for me to be able to share that after being cured of primary hyperparathyroid disease and alleviated of associated symptoms, I was able to unravel what seemingly is the root cause of several autoimmune conditions (ulcerative colitis, ankylosing spondylitis etc.)  I have also suffered from. Inflammation always prevented me from being as physically active as I would have liked.  My body would simply not cooperate when I put forth effort to exercise!

Good riddance to gluten, wheat and grains 

Finally, through research along with much trial and error I discovered,  that in my case, it is related to my being sensitive to gluten, the protein gliaden in wheat, a cross reactivity to some grains and nightshades.  It turns out, these sensitivities are not uncommon for those who suffer from autoimmune diseases. These conditions can improve significantly or resolve altogether when wheat, grains and other hidden forms of gluten are eliminated. 

Over the past two years, acting on new-found knowledge from Wheat Belly, ( William Davis, MD),  I followed the book’s protocol and changed the way I eat. I lost a total of 50 lbs. and the autoimmune issues calmed down. During my journey I was further inspired by  The Blood Sugar Solution, (Mark Hyman, MD), Wahl’s Protocol, (Terry Wahls MD), Against All Grain, (Danielle Walker), and The Paleo Mom, (Sarah Ballantyne, PhD)  Finally, without the symptoms of primary hyperparathyroid disease, inflammatory conditions under control through the dietary changes made, and pounds shed, I was able to work towards accomplishing a goal I never dreamed possible … one week before turning 57, I completed my first 5k race!

My Hope 

My health history is a bit overwhelming. I have always strived to never let any of these medical conditions define me and therefore have been reluctant to share publicly until now. At my core I am a positive person. I value a “can do” attitude and tenaciously look for answers to problems, and in the case of primary hyperparathyroid disease there is indeed an answer! My hope is that in the near future, diagnosis will be timely and that health care professionals will have a greater understanding of the disease, its symptoms and that surgery is the cure. I believe this is possible if enough of us are willing to stand up and be counted by sharing our stories and advocating for change. I encourage you to NEVER stop looking for answers to your symptoms and to keep the faith if you are suffering… and if you are fortunate enough to “be on the other side”, I invite you to help us create change.

In good health,

Barbara

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